Hope for Jackson Starts With You

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Mecp2 duplication syndrome is a debilitating disorder that affects Jackson. This disorder is defined by hindering side effects such as low muscle tone, non verbal, GI issues, seizures, recurrent respiratory infections and death. Jackson defeated the odds for the first 5 years of his life and was walking, babbling, pretty healthy and so incredibly happy until seizures took over. He lost the ability to walk, vocalize, eat by mouth, smile and laugh. He has been hospitalized several times for pneumonia, surgeries and seizures. But he continues to fight, he has never given up.

What if you were told that for $200,000 your son could be cured? Would you do everything in your power to raise those funds so your child didn't have seizures everyday, could walk again, say 'mom' and 'dadda' again, smile and laugh again? I know you would. That's why we are begging for help. Please join our fight to save Jackson.

Rachel Miller


What is MECP2 Duplication Syndrome?

Unlike Rett Syndrome, which is caused by mutations or deletions in the MECP2 gene, the symptoms that arise from the duplication syndrome are caused, as the name suggests, by having an area of the X chromosome (Xq28), which includes the MECP2 gene, erroneously duplicated. The section duplicated may vary from individual to individual and may also contribute to the severity of the disease.
The syndrome has been diagnosed mostly in boys. The majority inherits the duplication from their mothers who are typically asymptomatic due to favorable X chromosome inactivation (the moms have inactivated the X chromosome that harbors the duplication). Carrier mothers have a 50% chance of passing on the duplication to their children.
The MECP2 Duplication Syndrome may be quite prevalent.

Learn more about MECP2 Duplication here.

What is the MECP2 Duplication Syndrome Fund at RSRT?

In an effort to immediately leverage RSRT’s deep knowledge base and well established global scientific networks the MECP2 Duplication Syndrome Fund at RSRT was created in late 2010. The Fund puts the intellectual and scientific resources of RSRT immediately to work for the MECP2 Duplication/Triplication Syndrome community.
The Fund exclusively supports projects devoted to the study and means of treatment of MECP2 Duplication Syndrome. 100% of every dollar contributed is invested in research – not a single penny goes to overhead.
In 2012, a parent-driven effort was established to raise funds for the initial reversal experiments conducted at the Baylor College of Medicine. Families pledged to raise $401 to cover the cost of the experiments. The initiative was a success, and the 401 Project was born. All funds raised through the 401 Project initiative are directly deposited into the MECP2 Duplication Syndrome Fund at RSRT.

Learn more about RSRT here.

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